For Those Born With Rare Diseases, Early Diagnosis Can Save Lives
Hypophosphatasia (HPP) is a rare and potentially life-threatening disorder that can begin prenatally and adversely affects teeth and bone development. While the severity of HPP varies, with some cases only affecting dental development, children born with more severe forms of HPP have soft or weakened bones that can cause skelatol deformities, fractures, pain and, in the most severe cases, death. It is estimated that severe forms of HPP occur in one out of every 100,000 live births.
Racism and Public Health: Seeking an Improved Approach for the New Decade
"Racism is a public health crisis. It harms women, children, fathers, grandparents, aunts and uncles across the country. It harms all of us—it has for over 400 years and continues to today." - NICHQ President and CEO Scott Berns shares his priorities for 2020 and beyond.
Five Strategies for Building Diversity in a Patient Family Advisory Council
Improving health care systems to address persistent health disparities requires partnering with the people those disparities most affect. Only they can accurately describe their experiences and share what barriers they’ve encountered. This is why it's vital to build diversity into patient family advisory councils.
Using Social Media to Raise Awareness about Infant Safe Sleep
Social media’s enduring popularity makes it an optimal resource for safe infant sleep awareness building and education. To help you maximize your social impact, we’ve pulled together some high-level strategies and best-practices on social media-use, from increasing your follower base to crafting share-able social posts to measuring your success.
How Health Care Systems Can Isolate Women
Latoshia Rouse is the mother of triplets who were born prematurely, at 26 weeks gestation. She is also someone who knows too well that health care systems can both support and fail families. From struggling to find prenatal care to experiencing a dangerous postpartum hemorrhage, Rouse’s story reveals extensive holes in the health care system. To shed light on the pressing need for improvement across the continuum, Rouse shares each phase of her story here.
Steps to Reduce Opioid-Related Stigma in Pediatric Care
Stigma increases the feelings of guilt and shame experienced by mothers exposed to opioids, leaving already vulnerable mothers feeling isolated from supports. Here, two experts share strategies pediatric providers can use to reduce stigma and improve care for families affected by the opioid epidemic.